When my son with autism was 5 years old, a friend told me about Texas Medicaid Waiver Programs. I wasn’t really sure what these programs were or how they could help my son. I also did not think that my child would qualify because our family made too much money to qualify for Medicaid. It was all so confusing.
My friend urged me to put my son on all of the waiver Interest lists. She explained that most of the waivers are based on the person’s income and disability, not on family income. Back then, the interest list (we know it as the “waiting list”) for these programs was about 9 years long. I had high hopes that when my son’s name came to the top of the list, he wouldn’t actually need these services. I figured we could just say, “No, thank you.”
I just didn’t understand why he had to wait so long for services that he so desperately needed right now. Why wasn’t there more funding for these programs?
Then I heard about a non-profit group that helps families of kids with disabilities. I learned about the institutional bias in Texas and that some states don’t have institutions, so everyone is served in their communities. This means that in Texas, people with disabilities have immediate access to living in an institution but have to wait to get services to stay in the community. So people who want to live on their own or with loved ones must wait many years to receive less expensive support services in the community. It didn’t make sense to me!
Texas currently has over 198,000 people on waiting lists for Medicaid Waivers. The wait time for services is now more than 12 years long.
When I was first asked to contact my representatives about supporting bills that would fund more waiver slots and reduce the interest lists, I was very nervous and hesitant. I was afraid that I wouldn’t know what to say. Or that I would say the wrong thing.
Once I made a few calls, my fears were unfounded. There are also advocacy groups (see below) where you can sign up for “Action Alerts.” They let you know when and who to contact about specific bills. They make it very easy and even give you their talking points that you can use if you choose to.
When my son’s name finally came to the top of the list, we didn’t know how much this waiver program was going to help. But it did. Our son was able to get the therapy he needed. And our family was able to get much-needed respite. Camps, day programs, respite care, attendant care, and Medicaid insurance are just a few things that are now paid for by his waiver.
The legislative session is here! Don’t sit back and do nothing. Get involved and make a difference!
The following non-profits have information to help you understand the issues and how to contact your public officials:
Here is relevant information on this site to help you learn more about waiver programs and what they provide.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.